Autistic Terror: On “Impact”, and its Academic and Everyday Socio-Political Implications for Researched Communities

News

By Gill Loomes

“Are autistic people at greater risk of being radicalized? Those with the condition could be more likely to become ‘lone wolf’ terrorists”

So read a headline in the Daily Mail newspaper on Friday, 23rd June 2017.

My neighbours read the Daily Mail.

My neighbours know that I’m autistic, and that my life involves personal, professional and academic autism-related activism.

Brace for impact.

The Background

I’ve seen, and participated in, a considerable amount of discussion about this headline with the autistic community1 and other ‘stakeholders’ – publicly and privately, both online and in ‘real life’. The Daily Mail took the article from a contribution to The Conversation by Dr Claire Allely, Lecturer in Psychology at the University of Salford, which was initially published on 22nd June 2017, with the title “Autism and Terrorism: What are the links?” though the title was subsequently changed in some places to that which was referenced by the Daily Mail: “Are autistic people at greater risk of being radicalized?” The Conversation is a news and commentary site, produced by academics and journalists, a major focus of which is facilitating the accessible communication of academic research. In this spirit, Alleley’s contribution is based on recently published research (Faccini and Allely, 2017), the title of which was “Rare instances of individuals with autism supporting or engaging in terrorism.”

There are various ‘angles’ to this discussion, and the degree of anger, distress and fear caused, particularly to members of the autistic community, has been clearly apparent in such discussions. The handling of engagement by academic colleagues with members of the autism community on social media is worthy of particular attention. However, that is not my specific focus here. The ‘angle’ I want to take here, is to consider the academic research behind the article, and to use it in order to think about the nature of ‘impact’ – exploring the commonalities, challenges and tensions between research ‘impact’ as desired and sought by academic researchers, and that experienced by members of the researched population (in this case, the autistic community). My aim in exploring and explicating these aims and experiences is to encourage dialogue between researchers working in the field of autism, and the autistic and autism communities with whom they research. I do this while being acutely aware that these are not mutually exclusive categories – as an autistic researcher-activist, I’m noticing each ‘we’ and ‘they’ as I write them. However, it is precisely this ‘hybrid’ position that encourages me to pursue the approach I adopt here – that of attempting to explicate the concept of ‘impact’ as it is understood and experienced by researcher and researched communities, in the hope of encouraging meaningful and respectful knowledge and skills exchange, and the pursuit of ‘impact’ that is positive and beneficial for both the researcher(s) and the researched.

Research and ‘Impact’2

It has long been the case that academics engaged in critical scholarship have fought to create social and political change through research, and have argued that this has to involve working with communities outside of academia and being accountable for what they do. However, recent years have seen such aims adopted by academic funding bodies. Research Councils UK (RCUK) is a partnership of the UK’s seven Research Councils. It invests annually around £3 billion in academic research across disciplines (Research Councils UK, 2014). All applicants for Research Council funding must complete a ‘Pathways to Impact’, to show what they intend to do during the research process to enable impact in all its forms. Importantly, guidance on producing ‘Pathways to Impact’ stresses that RCUK is concerned with “principles and practices of co-production, as opposed to dissemination” (ESRC, 2017: n.p.). ‘Impact’ is about more than making sure that people outside of academia know about academic research and related findings. It is about changing things, people and ideas, aims that may be achieved in a variety of ways, including working co-productively with ‘stakeholders’ outside of academia. Importantly, in its guidance on developing Pathways to Impact, RCUK acknowledges the financial costs associated with knowledge exchange, collaborative working and generating ‘impact’ and emphasizes that, “researchers are encouraged to apply for funding to meet the costs of these steps.” (ESRC, 2017: n.p.) ‘Impact’ therefore, is recognized as integral to the ethics and policy of academic research, and is encouraged, including through financial provision.

Integral to this envisaged co-production is an understanding and appreciation of the systems, customs, cultures, and everyday social ‘worlds’ of the various partners involved in ‘co-producing’ impactful research. Interestingly though, a recently published study on academic ‘impact’ has pointed to a lack of such understanding (Matthews et al., 2017). In writing about his research with ‘co-production partners’ (in this case, civil servants’) Matthews (2017) details findings suggesting that the departmental, institutional and supra-institutional performance management frameworks to which academics must adhere, and by which they are often constrained, are not known or understood by co-production partners outside of academia (with the inverse of course also being likely!). He says

[Academics] behave in a lot of ways that are completely alien to those outwith academia. And we need to pause and think about this every now and then. (Matthews, 2017: n.p.)

These findings are suggestive of a need for greater focus in meaningful partnership and ‘co-production’ working on the aims, priorities, and constraints of each partner (or ‘stakeholder’). For this reason, I’m going to focus now on the concept of ‘impact’ from the ‘other side’ and turn my focus to the researched community. I’m going to consider ‘impact’ as it is perceived and experienced in everyday socio-political terms, by the autistic individuals and community whose personal lives, social identities and politics it shapes.

‘Everyday Socio-Political Impact’

Many of us who belong to marginalized, minority communities that are subject to the gaze of academic research will have felt the ‘impact’ of such research – as one particularly influential type of literature – in often profound ways, in the shaping of our personal lives, our social identities and our politics. I would describe this form of ‘everyday’ impact as socio-political in nature. In the context of autism, it is common for autistic people, particularly those who first identify as, and/or are diagnosed as autistic in adulthood, to talk about ‘discovering’ their autistic identity through literature. We relate accounts of having ‘read our lives on the page’ and having begun to understand ourselves, and our lives in different ways – the personal impact of which can be both visceral and profound. I have written elsewhere about the power of diagnosis, and of diagnostic language in shaping autistic social identity, in an exercise I referred to as “questioning internalized power” (Loomes, 2017:23). Likewise, it is common for the parents of newly diagnosed autistic children to talk of the ‘scary’ process of wading through the plethora of, often contradictory and sensationalist, literature now available online as a particularly brutal initiation into the ‘world’ of autism. Much of my own work in autism advocacy and activism has been concerned with attempting to ‘cushion the blow’ of this assault of information by providing peer support through which to filter and process that to which autistic adults and the parents of autistic children are often exposed, particularly around the time of diagnosis.

The impact of autism-related literature on members of the autistic and autism communities does not stop after diagnosis though. In his book “The Politics of Autism: Navigating the Contested Spectrum”, John Pitney Jr quotes the autistic self-advocate, Michael John Carley, founder of the Global and Regional Asperger Syndrome Partnership, who points to the emotional harm experienced by many autistic people who “grow up having to hear words like ‘cure’, ‘disease’, ‘defeat’ and ‘combat’” in relation to their autistic identity (Carley, 2012 in Pitney, 2015: 43). I should add that in the last months alone, I have seen reports of autism-related research covering the potential role of camel’s milk, of fecal transplant, of raising body temperature to mimic fever, and of worms’ eggs in the ‘treatment’ of autism. I have seen discussion of the administering in clinical research of repeated lumbar punctures to autistic children, where the same treatment in respect of ‘healthy control’ participants was deemed unethical, and I have read excerpts from a book written by the parent of an autistic child, claiming that autistic people lack empathy and ‘do not give or receive comfort’.

It may possibly be surprising to those who do not themselves identify as autistic, or possess a diagnosis, but the stigmatizing effect of such language can have a deep and devastating effect on autistic social identity-formation. Many autistic people talk of persistent feelings of doubting their diagnosis, or of attempting to ‘play it down’, and distance themselves from it. And possession of a stigmatized identity has profound ‘everyday’ consequences – including the persistent fear related by many autistic adults, regarding the necessity to disclose one’s autistic identity, particularly in education or employment settings. Recent media coverage would suggest that such concerns are valid – including this article, published in The Guardian on 7th July, 2017, entitled “What I wish I could tell my boss: My autism is not a problem.”, where an autistic employee reports having been asked by their boss “Don’t you worry that if you have kids they’ll be autistic?” and talks of the “shame and worry” they experience in the workplace.

Returning to the research quoted above, on the potential links between autism and terrorism, and the media attention that this research has gained, it is not necessary to look too far to gain an insight into what such links between an identity group and terrorism or radicalization may mean in terms of socio-political ‘impact’. The consequences of such a link are apparent in the reported instances of hate crimes against British Muslims following terror attacks. A government working group on anti-Muslim hatred reported a spike in Islamophobic hate crime of more than 300%, to a total of 115 reported attacks, in the week following the Paris terror atrocities of November, 2015. British Muslim women in public places were the targets of the majority of such reported attacks (The Independent, 2015). Coupled with this, recent academic commentary has suggested that anti-Muslim hate crime is not taken seriously in Britain (Massoumi et al., 2017). There are clearly very real, and very dangerous ‘real world’ social and political consequences for any community or social or identity group that finds itself ‘linked’ to terrorism or radicalization. For this reason, I argue that researchers should think very carefully indeed before using references to terrorism or radicalisation in the dissemination and promotion of their work.

What is written and said about autism therefore has ‘impact’ in a very real, ‘everyday’ sense for the autistic community. But when it comes to this everyday socio-political ‘impact’ – the playing field is not equal. Academic research has a political and authorial power over our community that surpasses that of anecdote or (social) media comment. Academic research written and disseminated about autism not only shapes social discourse (and how we are received by our families, or neighbours, our employers) it also influences law and policy (as the research on autism and terrorism that provoked me to write this article professes to aim to do in relation to the treatment of autistic people in the Criminal Justice System). In as much as autism research also shapes the revision of diagnostic criteria, researchers also act as gatekeepers, not necessarily to our community, where self-identity is (broadly) understood and accepted, but certainly to professional supports and accommodations or adjustments, by placing (and moving) the goalposts as to what ‘counts’ as autistic. (It is worth noting that this relationship between research, diagnosis and access to support places the autism researcher in a multiply layered position of power in terms of shaping and influencing social understanding of autism and the lives of autistic people). Autism research is powerful.

In recognizing and acknowledging this power – this ‘impact’ – though, it would be a mistake to claim, or imply, that such ‘impact’ is inherently negative or damaging. The power of research to effect social change is what drew me to work in academia, and to pursue PhD study. It has also been a consistent motivating factor in encouraging me to include research participation as a key part of my autism activism. Research has given words to my very deepest experiences, feelings and political values, and has enabled me to answer, sometimes troubling questions for myself, and for autistic people I have known personally and professionally. I am passionate about the potential for research to make a difference, and I stand with the members of the autistic and autism communities represented in the study by Pellicano et al. (2014), who advocated the prioritization of research that makes a difference in the lives of autistic people and their families “in the here and now”.

But with great power comes great responsibility.

Research “Impact” – Damage limitation?

‘Impact’ is clearly a significant aim of academic research. It would be very strange if this were not the case. Human beings are not generally in the habit of expending energy on endeavors that are not likely to generate ‘impact’, either for themselves or for the world around them. However, it seems that a key to the success (as understood by the participants in the co-production of research impact, and the wider communities that form the focus of such research) is meaningful dialogue throughout the research process, from proposal to dissemination, that takes into account the positions – the aims, the priorities and the constraints – of each of both the researcher(s) and the researched individuals and communities involved.

I have tried to show here, and argue strongly, that a significant aspect of ‘impact’ for the (autistic) researched community is felt in an everyday, socio-political sense. Academic research shapes our lives – particularly given its relationship with, and ability to influence the diagnostic criteria that define autism in a clinical sense; and given the translation of research, which will often in its original form be ignored by policy members and wider society, into media headlines which will inform policy and social opinion. It controls our access to support and adjustments in navigating the social world, it impacts on our social identities and our politics. Most seriously, it has the potential to put our emotional wellbeing and our very safety in the community at risk. It is essential that researchers and research participants in the field of autism are aware of the power of these forms of ‘impact’, and that they are a consideration from the outset of any proposed autism-related research.

In this article, I have tried to encourage, and to add to these considerations by setting out for non-academic participants in autism-related research the key priorities and framework of academic ‘impact’. In doing this, I hope to have provided tools in the form of language and resources to enable non-academic participants to discuss, and to hold academic researchers to account for the impact generated by their research. I have also described some of the everyday socio-political ‘impact’ of research as experienced by researched individuals and communities, especially those that are marginalized social minorities. It is my fervent hope that such ‘everyday’ impact will be at the heart of academic considerations concerning ‘impact’ generation. These ‘everyday’ consequences of research remain with the autistic community across our lives. They shape our experiences and they have the power to improve, or to destroy our lives.

Despite the personal trauma of repeated exposure to headlines generated by autism-related research, I am hopeful that we, as autistic and autism researcher communities are moving forward in terms of meaningful autistic participation at all stages of research processes, so that the generation of ‘impact’ in academic, and in everyday socio-political senses can be positively planned, and the risks associated with such ‘impact’ – especially in the everyday lives of members of the autistic community can be limited. I see the development and expansion of the Participatory Autism Research Collective (PARC) as key to this forward progress. One thing is clear though, this can never be an ‘added extra’, or a ‘nice thing if we can manage it’. There’s a moral obligation on researchers to work collaboratively with the communities with whom we research, and to whom we profess to ‘give voice’ in order to recognize, acknowledge, and as far as possible, control, both the academic and the everyday social and political ‘impact’ of research on the researched (autistic) community. Also, to be transparent on our efforts in this regard, and to be prepared to be held to account by researched communities. If we want ‘impact’, we surely have to plan for this from the outset of research proposal and planning, and work to minimize the individual and community risks posed by such ‘impact’.

Otherwise, what will the neighbours say?

Notes

In this article, where I reference ‘the autistic community’, I refer to those diagnosed or identifying as autistic. Where I use the broader terms ‘autistic and autism communities’, I intend to describe autistic people and their family members, paid and unpaid carers and other supporters and allies.

In preparing this article, I found several resources on academic impact – not all of which are referenced here. I listed some of them in a tweet ‘thread’ on Twitter, using the hashtag #academicimpact.